Help - infectious Disease Dr

[earnestfamily7]

Help! I need some advice on dealing with our infectious disease dr. ... We met with him today for a 2nd time as I wanted him to be aware that some of the symptoms returned... since on the day of or 1st visit there were no or few exasperations

 

He asked about the symptoms... told me that the blood drawn in Dec looked good (no high ASO titers) and that he wanted to consult with the nuerologist again as the symptoms to him were pointing to OCD.... (at this point I want to SCREAM!!!! but dont as I hold onto the hope that he will come to 'my side"

 

He is supposed to call me on Thursday to discuss future treatment. I need help. How do I show the doctors that he could still have PANDAS and not have the ASO markers/titers needed? How do i make them understand that he only has the OCD behaviors in periods of exasperations? How or where do I direct them so they are aware that amox may not eliminate all the symptoms and that he should be considered as a candidate for IVIG...

 

any and all advice is appreciated!

Steph

[sf_mom]

My father-in-law is a Dr. and he summarized the following articles so a Dr. could easily understand. There are no raised titers because the S. Pyogenes acts differently on a child's immune system when infected. Hand them these studies. If they don't budge, move onto a Dr. versed in PANDAS.

 

 

1. Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

2. Antibody-Mediated Neuronal Cell Signaling in Behavior and Movement Disorders http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

 

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In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody due to AGE/state of immune system at time of exposure. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates. This humoral response to the exposure to strep pyogenes is because it secretes protease enzymes that destroys antibodies measured by an ASO titers or Igg level.

 

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea). Hence no raised titers unless additional exposures to more traditional strep strains occur.

 

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

 

 

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THE HIGHER DOSE OF Antibiotics works because there is an underlying infection still within host!!!!!!!!!!! Relapses after PEX are because the bacteria was not fully eradicated. IVIG and antibiotics work because you overwhelm the bacteria. Some kids will need more than one treatment to recover and jump start their own immune system.

[earnestfamily7]

My father-in-law is a Dr. and he summarized the following articles so a Dr. could easily understand. There are no raised titers because the S. Pyogenes acts differently on a child's immune system when infected. Hand them these studies. If they don't budge, move onto a Dr. versed in PANDAS.

 

 

1. Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

2. Antibody-Mediated Neuronal Cell Signaling in Behavior and Movement Disorders http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

 

--------------

 

 

In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody due to AGE/state of immune system at time of exposure. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates. This humoral response to the exposure to strep pyogenes is because it secretes protease enzymes that destroys antibodies measured by an ASO titers or Igg level.

 

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea). Hence no raised titers unless additional exposures to more traditional strep strains occur.

 

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

 

 

--------------

 

 

 

THE HIGHER DOSE OF Antibiotics works because there is an underlying infection still within host!!!!!!!!!!! Relapses after PEX are because the bacteria was not fully eradicated. IVIG and antibiotics work because you overwhelm the bacteria. Some kids will need more than one treatment to recover and jump start their own immune system.

THANKS!!!! I am going to their website and will try to email the links tonight!

[dut]

Hi.. you want to go to the top of the PANDAS forum, and look at the pinned section.. "helpful threads".. many of the posts contain stuff for doubting drs.. the 3rd post will be particularly usual as it contains info on ASO and AntiDNaseB and why they can be low. There is also a paper somewhere .. may be in that pinned section that looks at the failure rate of amox/penicillin for strep. Maybe someone else can ttell you whjer eyou can find that one.

 

good luck...

[melanie]

Help! I need some advice on dealing with our infectious disease dr. ... We met with him today for a 2nd time as I wanted him to be aware that some of the symptoms returned... since on the day of or 1st visit there were no or few exasperations

 

He asked about the symptoms... told me that the blood drawn in Dec looked good (no high ASO titers) and that he wanted to consult with the nuerologist again as the symptoms to him were pointing to OCD.... (at this point I want to SCREAM!!!! but dont as I hold onto the hope that he will come to 'my side"

 

He is supposed to call me on Thursday to discuss future treatment. I need help. How do I show the doctors that he could still have PANDAS and not have the ASO markers/titers needed? How do i make them understand that he only has the OCD behaviors in periods of exasperations? How or where do I direct them so they are aware that amox may not eliminate all the symptoms and that he should be considered as a candidate for IVIG...

 

any and all advice is appreciated!

Steph

 

 

This sounds very familure!!Does your ID md last name start with a B and end with an L ? This exact situation happened to us our ID md wanted so much to help but kept refering back to the neurologist .He did give us antibiotics . That was several mds ago. My advice is move on right away dont waste your time educating him...You dont have to listen to me but Ive been there well Ive been everywhere.Its not that they dont want to help ..its that they are not sure and just like us , when your not sure you do well..nothing..And we know thats only going to work for a short period of time.By the way screaming is going to hurt your throat.Try some wine LOL.Take a deep breath and remember when one door shuts a window is opened?

 

Melanie

[dcmom]

Steph- I agree with Melanie. When your child's well being is at stake, I don't think it is the time to educate the doc- unless they are VERY willing to do what you say. If there is any way you could get to one of the pandas docs- it will be so worth your while.

 

We all know what these kids need: full strength, long term antibiotics (with the ability to try whichever ones may work), steroid bursts, and very possibly IVIG and/or plasma pheresis. We as parents really need the mental support of the doc. It is such a hard disorder to deal with on a daily basis- that I can't imagine having to go in and fight with the doc.

[dut]

Re-reading this, I think dcmom and Melanie are right too.

We had an awful appointment with a non believing Infectious Diseases Dr. It was slap bang in the middle of a bad exacerbation. It was a waste of time and had me in tears that night.

 

They are both right, you don't have the time or energy to waste on non believers if you can make it to a PANDAS dr if at all possible.....